The 5 Things My Illness Forced Me to Learn—That Everyone Should Know

For some, chronic illness descends slowly with intermittent aches and pains. For me, it came overnight: One week I was bouncing around Nashville bars; the next I was hunched over at work with headaches, fatigue, and body aches.

At age 22, I’d come down with the Epstein-Barr virus, commonly known as mono. It shattered my immune system and completely derailed my life. I was bedridden for the good part of a year, and I've spent the last five years dealing with near-constant chronic fatigue, pain, and POTS (postural orthostatic tachycardia syndrome).

Photo: Lindsay Sihilling

Before I was sick, I was a mountain guide. I was quick, strong, and carefree. Now I often wake to a debilitating fatigue that feels like the hangover of a lifetime—one that won’t fade away by the afternoon.

Such a dramatic onset of illness has required a lot of me: the maturity to accept loss, the courage to question my doctors, and a daily willingness to let go of the things that no longer add to my life.

It’s definitely a different way of thinking of wellness. So much of today's advice emphasizes addition as the path to health: Drink more green juice. Lift moreweight. Sprinkle more chia seeds.

But I’ve found the opposite to be true. The practice of letting go offers a much better way to understand what my body requires to heal. In fact, it's helped me recognize five things in particular that I needed to drop to lead a healthier, more integrated, and peaceful life.

1. My Post-College Plans

By now I thought I’d have two master’s degrees and a tricked-out passport. I wanted the world when I graduated college: travel, independence, and a career in hard-nosed journalism.

Instead I was feeling nauseous at parties, waiting on hold with insurance companies for hours, and sleeping in my car after job interviews to recover from the exhaustion. The fatigue was bone-crushing, amazing in its power to suck out every ounce of life and spirit.

After I got sick, I still wanted to keep up old habits. I made plans to go camping. I stayed up late. I drank beer and ate pizza. Now I see that this was my way of scolding my body for what it simply could no longer do. I liked the way my story was going, and when the plot veered south, I spent years kicking and screaming for a rewrite. But my illness forced me to reframe my narrative.

I’d made a slow turn toward reality, and my body was thanking me for slowing down.

Two years after coming down with mono, I was shopping at REI. I’d accepted a job on a farm outside of London—another endearingly sad act of denial. I was going to be a gardener—delirious with fatigue. As I struggled to try on boots, it occurred to me that my life wasn't going to be what I'd hoped. I thought, "Maybe I’m not up for this. Maybe this is bad plan." Finally, I realized it was time to let those plans go.

Soon after I resigned from the job, I started to rethink my dream. If I couldn’t farm in England, I’d plant seeds in my backyard in St. Louis. It was a heartbreaking compromise at the time, but it was also my first gesture of acceptance. I’d made a slow turn toward reality, and my body was thanking me for slowing down.

Although I can’t control the disease, I know now that I have the responsibility to determine its effect on my life. To some degree, I’m still the narrator, the one who can name what is good and beautiful about a hard situation.

2. My Doctors’ Authority on My Body

“Your body is your business.” Those words from Lissa Rankin, M.D., have been a wonderful encouragement to reclaim my body from the misguided information I’ve received from so many specialists. My family physician, for instance, did more harm than good when she wrote me a steady supply of antibiotic prescriptions for a year to try to manage chronic sinus infections—drugs I now know appear to be detrimental to healthy gut flora and to open a floodgate of issues like leaky gut syndrome. The role of gut microbiota in immune homeostasis and autoimmunity. Hsin-Jung Wu, Eric Wu. Gut Microbes. 2012 Jan 1; 3(1): 4&ndash;14.

I’m my body’s best caretaker. Every day I decide what’s going to be the most nourishing form of medicine—whether that’s a hefty dose of ibuprofen or a few glasses of wine shared with girlfriends.

I love this approach because it empowers the patient to take a more active, participatory role in their healing. I’ve seen more than 20 specialists, and not one asked me about my thoughts on my body, illness, or recovery. It was only my functional medicine doctor who emphasized that diet is a medicine stronger than any drug. We know our bodies best. Who’s to say that someone in a white coat gets to have the last word?

3. My Favorite Foods

A black bean quesadilla: That’s what I ate regularly for lunch before a friend urged me to think more critically about food. While it wasn't the most unhealthy choice (I was adding vegetables! The tortilla was whole-wheat! The salsa organic!), the quesadilla era of my life was more about consuming food without thinking about its nutritional properties, the ethics of its sources, or what kind of environment it was creating in my body.

After much research and talking with other food-conscious folks, I’ve found the foods that work best for my body. I avoid gluten, dairy, sugar, and all processed foods because they promote systemic inflammation in my body. I try to eat slowly, mindfully, and locally. I know the names of a lot of people who grow my food and can make a mean salad from my own backyard garden.

Interestingly my roommates were unaffected by the quesadillas we had for lunch everyday. They didn't become post-quesadilla zombies. Now that I’m studying to become a health coach, I see the wisdom of bioindividuality: The idea that one person’s food is another person’s poison. What makes me feel energized may have deleterious effects on someone else’s health. We should all pay attention to what our food is offering our bodies, whether it's energizing nourishment or a post-lunch slump.

4. The “B-Word”

Busy! My journey with illness has forced me to rethink how I choose to relate to time. I learned the beauty of embracing a slower life from Brené Brown, a researcher and professor at the University of Houston. In her book Daring Greatly, she writes about how exhaustion has become a status symbol and a metric for self-worth. “’Crazy-busy’ is a great armor, it’s a great way for numbing,” Brown writes. “I see it a lot when I interview people and talk about vacation. They talk about how they are wound up and checking emails and sitting on the beach with their laptops.“

I think I used to be like that: frazzled, overcommitted, waving around my to-do list like a flag to say: “I’m doing important things.“ “I don't have time for you.“ “I’m too busy to help out.“

Because I simply can’t keep up with my former pace of life, I enjoy so much more by doing less.

But now because I simply can’t keep up with my former pace of life, I enjoy so much more by doing less. I’m more available to the people in my life; I often cook long, leisurely meals; and I wake up early in the morning to write. I know my priorities. I work hard to get them done. The rest is for gardening, yoga, and cooking for people I love.

5. An “Average” Workday

Because fatigue gets the best of me, I have to nap every afternoon. It happens every day around 3 p.m.: I’m writing, I get sloppy with brain fog, and I start to plot my stopping point.

My daily siesta has made me particularly sensitive to the cultural stigma around the afternoon nap—and rest in general. I used to make myself miserable with guilt every afternoon. With the sun still shining, I’d tuck myself into bed and think about how I should be working, creating, producing—anything but sleeping. It felt really bad.

And although there is plenty of research in praise of the power nap, my issue was more about the shame of not being able to live in the flow of a “normal” life with its 9-to-5 workday, post-work happy hours, and time allotted for exercise and errands.

But that just can’t be my way—and frankly, I’m not sure it would be if I were perfectly healthy. I’m introverted and bookish. I’m always nursing a cup of steaming tea. Perhaps I’ll always gravitate toward a quieter, slower life. Maybe happy hour isn’t really my thing anyway.

This notion also applies to those whose bodies don’t need a daily nap. It’s about relaxing into the inherent limitations in your life instead of forcing a better reality. It’s about accepting what is honestly available to you and embracing what may never be: a fertile body, wages commensurate to talent, or a functional relationship with your family. Instead of lamenting what I've lost, I’m learning to simply love what is.